Friday 28 June 2013

Love Transcends Alzheimer's and Dementia

I have found the paradox, that if you love until it hurts, there can be no more hurt, only more love- Mother Teresa

The following video, from the Alzheimer Society of Calgary, Alberta, is an inspiring and beautiful tribute to the power of love that shines through the experience of Dementia. This couple teaches us that they didn't chose to have Dementia in their life, but they have chosen to embrace their experience from a kind, loving and calm perspective. They remind us to live each moment fully and that we need to live those minutes by hugging more and loving more. Thank you for sharing your beautiful story with us. You have touched us with your spirit and love!!


Thursday 27 June 2013

Light A Candle

"It is better to light a candle than curse the darkness" (Eleanor Roosevelt)

I often hear people say that things happen for a reason. This expression is commonly heard when trying to make sense out of difficult circumstances in our life. It is a way of saying, "why is this happening and what purpose does it serve in my life"? I have asked this same question over and over again as it relates to Alzheimer's disease. What purpose could Alzheimer's disease possibly have?

I believe that Alzheimer's (and related Dementia's) are a gift. I know this sounds strange for a disease that is often described as robbing people's minds, memories, personalities, connections and overall mental abilities.  People who have the disease are often described as victims, suffering, tormented, ravaged and many more sad and descriptive words.

I don't deny the challenges and struggles surrounding Alzheimer's disease and I am grateful for the many wonderful books, websites, articles and resources that are available to help people cope with the disease. I want this blog to be about hope and the peace that we can find as we learn the lessons that we are meant to learn from our experiences with dementia.

Alzheimer's disease is a spiritual journey and creates an opportunity for us to become more connected with our souls and the things that are most important in life. I don't have all the questions about Alzheimer's and I most certainly don't have the answers, but I do know that I am a more centred and peaceful person since Alzheimer's was in my life.

I send out a heartfelt invitation to join me and others who have been touched by this disease as we explore, grow and make changes in ourselves that will have a ripple effect on those around us. Whether you're experiencing dementia yourself, or you're a "soul" partner you have a home here where you can share your thoughts, feelings and insights.

My intention is to write a book about Alzheimer's disease and the gifts that lay hidden in the day to day struggles. Please share your uplifting stories, words of wisdom and insights so that together we can attempt to make some sense out of this disease.


Wednesday 26 June 2013

Surrendering to Alzheimer's

Man has nothing else to do but surrender- in deep trust, in deep love. Don't be a doer, just surrender. Let there be a let-go. - Osho

Letting go of control is one of the biggest challenges we face in life. We work so hard at staying in control and keeping things orderly in our world, that when that's threatened we experience a lot of stress and anxiety. The more we try to be in control in our life the more we suffer.

Letting go of the illusion of control is called surrendering. Surrendering is a conscious decision to accept that some things, in fact most things are out of our control. This is very profound when it comes to Alzheimer's disease. Surrendering to Alzheimer's means that we are giving up the belief that we have control over the disease and that what we do will change the disease.  A great deal of suffering in relation to Alzheimer's disease is caused by trying to control the disease. By letting go of that control we are letting go of the suffering.

Surrendering to Alzheimer's also opens up space to work on that area of our life that we actually can control, ourselves. It enables us to pour energy into finding ways to be more peaceful and less stressed. It's a huge shift, but a shift to loving and caring for yourself.

A good time of day for me to remind myself about surrendering is at night. If I have something or someone that is bothering me and I know that it is out of my control to "fix", I visualize the problem or person evaporating off my shoulders and out into the universe. I say a loving affirmation for the situation or person and then I let it go. When I've done that I bring my attention back to the present moment and ask myself, "Do I have a problem in this very moment?" The answer is almost always "no" as the problem only becomes a problem if I'm worrying about the future or dwelling on the past.

Dr. Amy Johnson wrote an article,  Let Go of Control: How to Learn the Art of Surrender.  This article includes some helpful ideas about how to actually learn to let go of control. She asked whether letting go would feel like freedom?  Do you think that's possible when it comes to Alzheimer's disease? What does surrender look and feel like to you?

Monday 24 June 2013

Alzheimer's "Caregiver" or "Care Partner": What Difference Does it Make?

by Bev Janisch

I've been struggling with the terms that we often use to describe the relationship between either formal or informal caregivers. Part of me wonders whether it really matters, and the other part of me thinks it matters as our words often dictate our thoughts, emotions and actions.

"Caregiver" and "care provider" are common terms that we often hear. The problem I have with these terms is the connotation that care is either provided and/or given and it is a one way street from me the "caregiver" to you the person with Alzheimer's disease.  I feel uncomfortable with this one way flow and somehow I believe it diminishes what really happens in the relationships between people. Interactions and connections with people experiencing Alzheimer's disease goes way beyond the "care" portion of the equation.

There were many times in my relationship with my mother in law that she was reaching out to me and trying to be supportive and helpful. This part of her nature existed until the very end of her life. Referring to myself as her "caregiver" or "care provider" somehow diminished her role in our relationship.

I think the terms, "caregiver" and "care provider" are consistent and aligned with a medical model of providing care and don't do justice to a more holistic and spiritual environment. I've been trying to come up with alternatives and the term that comes to mind is "soul partner".  The concept of being connected as souls seems to fit better with what I would hope we can work towards in our connections with people experiencing Alzheimer's.  I believe the soul is present in spite of the disease, and since we all have one, attempting to connect as souls would create more beautiful moments of mutual connection and sharing.

Perhaps changing from "caregiver" to "soul partner" would change the very nature of our relationships with people experiencing Alzheimer's from one based on care to one based on human beings. What are your thoughts about this? I would love to hear any other suggestions that you have about what to call this very special relationship!!

Thursday 20 June 2013

The Silver Lining of Caregiver Stress

by Bev Janisch

Your mind is a constant traffic of thoughts, and it is always rush hour, day in, day out.  Meditation means to watch the movement of the thoughts in the mind- Osho

I am sitting in the hospital room with my father who was admitted to acute care after having extreme side effects from his cancer treatments. My mother is in another hospital being treated for heart issues. All of this is happening at the same time, and I'm thinking this is the perfect time to reflect on and write about stress.

I know it sounds strange that I believe there is actually a silver lining to stress.  Experiencing stress and then acknowledging it, can be a motivating factor to try and find ways to experience less stress and become more peaceful.  Stress, regardless of the source contributes to many health issues and wreaks havoc on the body, mind and spirit.

There is no doubt that Alzheimer's caregivers experience a lot of stress, and unlike my situation, the stress often goes on for long periods of time.  Finding ways to deal with stress is the blessing as once a person has some tools to deal it, they can use these tools in all aspects of their life. We can't control the fact that someone we love has Alzheimer's disease, but we can control what we think about it and how we respond.

A few months ago, I began to practice meditation. I started at 5 minutes a day as I really didn't think I could do it. I have stuck with it, gradually increased the time and have been amazed by the effects. I feel more calm, peaceful and less scattered and I've had the opportunity to test how I'm doing with the recent situation with my parents. Meditation has helped me observe my thoughts and return to a feeling of peace when I start to feel stressed. Before meditation, I didn't notice that I was stressed as I wasn't aware of what was going on in my body or in my mind.

Meditation, can be done anytime, anywhere and doesn't require any special equipment. The ability to return to this place of calm is an amazing gift and is always with you as you travel through the day. I started with the Chopra Center 21 Day Meditation Challenge, an app you can download ( the first three days are free and then it's .99 cents a day).  It was a great introduction to meditation which required a very small time commitment. After 21 days of doing it , I couldn't imagine my life without it.    Having the ability to soothe yourself in times of stress is a gift well worth the practice that it takes to do it.  So give it a try and let me know what you experience!!

Sunday 16 June 2013

The "Prickly" Behaviors of Alzheimer's Caregivers

Mark and his mom, Jessie

In my previous post, I talked about the "prickly" behaviors that people with Alzheimer's disease sometimes exhibit. I explained that at times these behaviors may be indicating that the person has an underlying physical problem.

I've also witnessed and been guilty of the odd prickly behavior myself.  The root of these prickly behaviors in caregivers is not physical, rather it's spiritual. I think one of the most common prickly behaviors in caregivers is the struggle to accept the reality of the person experiencing dementia.  We think that our reality is the right one and we attempt to constantly correct the reality of the person with Alzheimer's.

My husband really struggled with this when it came to his mom, Jessie. He is such a kind hearted and honest person that he would often try and impart the "truth"on her and this would often result in her being anxious. On many occasions, especially earlier on in the disease, she would call us repeatedly throughout the day in a panic to come and pick her up to take her home. When I answered the phone, I told her I'd be over after work and we would get it organized then.  She would then calm down until the next phone call. When my husband answered the phone, he would try and explain where she was and why she had to stay there and that he couldn't pick her up. She would then become very anxious and agitated and was clearly suffering. My husband did what a person would normally do in that situation and try and explain. The difference is that Alzheimer's disease is not a normal situation.

I was recently talking with a friend of mine whose neighbor had Alzheimer's and he was often out roaming the neighborhood looking for his dog, which had previously died. Not knowing what to say she'd gently explain that the dog was no longer alive and this would leave him feeling really upset and angry. We talked about another approach which would be to tell him that you'd keep an eye out for the dog and would return the dog home when found.

When we're dealing with Alzheimer's disease we are not dealing in what is rational or what should be.  Our goal is to provide comfort in the moment and in these cases little white lies are gifts to the disease. The kind, loving, compassionate thing to do is to go along with whatever their truth is and realize they are always right.  Jolene Brackey, in her book Creating Moments of Joy for the Person with Alzheimer's or Dementia, described wonderful and creative ways to respond.  As she describes so beautifully, "When a person has short term memory loss, his life is made up of moments.  We are not able to create a perfectly wonderful day with those who have dementia, but it is absolutely attainable to create perfectly wonderful moments."

Maybe learning to be less judgemental and more accepting of peoples perceptions of truth could apply to other areas in our life when Alzheimer's isn't involved.  Perhaps if were more able and willing to accept other people's truths, we would find ourselves being more accepting, more peaceful and experience less conflict. The need to be right is a destructive force in any relationship.

What little white lies, as gifts, have you told and what happened???

Thursday 13 June 2013

Dealing with Alzheimer's "Prickly" Behaviors

by Bev Janisch

As a Clinical Nurse Specialist in Dementia care, there were countless times when I was asked to consult about a person's challenging behaviors. These "prickly" behaviors, as I like to call them, can range from aggression, to restlessness, to verbal ranting and a whole spectrum of other things that are difficult to understand and deal with.

Learning to understand what these behaviors mean and how we need to respond is critical if we are to adequately support and care for the person with Dementia. All the good intentions in the world won't help if we don't learn to be Sherlock Holmes and get to the bottom of what is going on.

I never like to equate grown adults with Dementia to children, but there are times that it is helpful to understand certain things in this context. For example, when something is bothering a child, they often tell us by "acting out" behaviorally rather than explaining what is bothering them.  This is the same for people experiencing Dementia. They are trying to tell us that something is not right in their world.

So when we see those "prickly" behaviors we have to first look for physical causes such as pain, infection, depression, too much external stimulation resulting in an internal stress response or countless other physical causes. All too often, we jump too quickly to a medication that we hope will settle the behavior. When we do this, we're ignoring the underlying issue, which if left untreated will result in needless suffering.  The behavior is a symptom. What is it telling us???  We need to figure it out and address it so that the person's spiritual nature can shine through.

Share your stories and feel free to ask a question if you'd like to pick my Sherlock Holmes brain.


Tuesday 11 June 2013

Alzheimer's Spiritual Mind

by Bev Janisch

Peace is your natural state. It is the mind that obstructs the natural state- Ramana Maharshi

I listened to a fascinating talk by Bruce Lipton Ph.D as part of the Hay House World Summit. The title of his talk was "How to Live in Heaven on Earth."  He talked about people having two minds that are connected but not the same.  One of the minds is time bound and primarily focuses on the past and future.  This mind is programed by the way in which people are brought up and is commonly referred to as the subconscious mind.  It is responsible for habits and learning which means that once you've learned something you don't need to relearn it. The second mind, is the conscious mind, and it forms the  "foundation of our spirit." It is also the creative mind that includes our hopes and desires and is the mind that is at work when a person is in the moment.

I thought about this as it relates to people with Alzheimer's disease and wondered if the mind being affected by the disease is the time bound mind and the one that is still present is the one that arises in the moment.

This seemed to really fit when I reflected on my experiences with my mother in law. She couldn't remember her past and wasn't able to plan for the future, but was fully able to have relationships and connections in the moment. She couldn't remember that I was her daughter in law but she was able to connect with me when I was with her. This connection remained to the very end of her life. She also was able to form relationships with other residents. She developed a special friendship with a man which brought her tremendous comfort. I also noticed how she commonly would reach out to another resident with a kind word or a gentle touch as she was going by. These things were never lost

Share your stories of connection and examples of how the foundation of the spirit still remains when the time bound mind fades.



Monday 10 June 2013

Living in the Moment

The secret of health for both mind and body is not to mourn for the past, not to worry about the  future, or not to anticipate troubles, but to live in the present moment wisely and earnestly- Buddha 

If I knew then what I know now I would have experienced Alzheimer's differently. Like many people, I always recognized the importance of living in the moment and that life is made up of a series of moments and that if you miss the moments you miss life. But I, like so many have struggled with  exactly how to do that.   

In January I climbed Mount Kilimanjaro in Africa. I made it to the roof of Africa and accompanying me was an audio book by Eckhart Tolle, "The Power of Now" and an audio book on learning to meditate. I realized that I needed to learn how to live more in the moment  and that perhaps a good time to absorb this would be on the mountain. As it turned out the mountain was not the time to learn a new way of "being" so it wasn't until I got back to the comforts of my home did I actually listen to the audio books.

When I did, a light bulb went on for me. I understood the "Power of Now" and that learning to live in the now was a gift that Alzheimer's was giving us. I realized that the only thing that really matters in our connections with people experiencing the disease is that we're in the moment.  Living in the past causes sadness and depression and anticipating the future often results in anxiety and worry. The only real peace is in the moment.

Imagine a world where everyone who was touched by Alzheimer's disease learned to live in the moment.  Eckhart Tolle and many other spiritual leaders have said that living in the moment is our primary purpose in life. Alzheimer's disease is creating that opportunity to embrace that way of being in this world and ultimately the best chance that we have of peace.

The next question is, how do we learn to live more in the moment?  One way to practice is to begin paying attention to your thoughts. Not in a judgemental or critical way but as an interested observer. Do you spend most of your time thinking about the past or are you more focused on the future? Notice the feelings that accompany your thoughts. Do you feel sad, mad, scared or glad?  How much time do you spend in the present moment?

Try to pay attention to your thoughts about Alzheimer's disease and then share what you find with the rest of us. I used to spend most of my time dwelling on the past or worrying about the future. I've been practicing, and now I find I am able to spend more time enjoying the moment, with less stress and more peace.  In the coming posts, we'll explore ways to move beyond mind created stress so we can spend more of our life living in the moment.